5.22.2015

One of the highlights of the 2015 International Meeting for Autism Research (IMFAR), for me, was being invited to speak on the panel for the ASDtech SIG (Special Interest Group). I've created a Storify compilation of the panel's highlights, but was also given the chance to opine on how tech can best benefit autistic people like (and unlike) my son. So I did, as you might imagine.

Sue Fletcher-Watson of Edinburgh University organized the panel and moderated the
discussion. My co-panelists were Ofer
Golan of Bar-Ilan University and The Transporters;
Dan Smith, President of Autism Speaks's DELSIA, (Delivering Scientific Innovation for
Autism); and
Oliver Wendt of Purdue University and SPEAK MODalities LLC.

I’m senior editor at Thinking Person’s Guide to Autism, which is a website, book, and information-sharing community of autistic people, professionals, and parents. I’m also the parent of a 14 year old mostly non-speaking son. He’s very awesome. If you’re interested in iPad technology you might know him, he was in a lot of the early videos [at 13:45] and articles about iPads and autism.

My background is as a software producer, professionally, for both Electronic Arts and The Learning Company. I’ve been using that expertise to give iPad workshops all over the world about how iPads can benefit autistic people, and I help maintain a recommended apps and resources spreadsheet that has been shared a lot.

But one of the most important things I try to do as part of Thinking Person’s Guide to Autism is, in our Facebook community — which has over 130,000 people and I highly recommend you join — is hear directly from families, from professionals, and specifically from autistic people themselves as to what is it that they want in their lives, what will help them.

So if you’re talking about dissemination, and making connections: we have a fairly global audience, and community. And that is a really good way to actually build those vectors.

What we mainly hear from our autistic community members is that they need things to help them now. I don’t know how many of you are familiar with the wearable technologies research of Matthew Goodwin, or of W. Samson Cheung at the University of Kentucky and his LittleHelper software for Google Glass — but these are technologies that are going in the right direction, which is that they have the potential to help autistic people be better autistic people, instead of trying to normalize them.

It’s really important for autistic people to learn to cope with a world that is generally not set up for them, and not friendly to them — but we should not be doing that by trying to force them to be non-autistic. We should be helping them learn, and cope, and adapt. So you can look at Mr. Cheung’s Google Glass and realize that its ability to help people identify others’ facial expressions and moderate voice volume are actually things that could potentially help some autistic people in situations like job interviews. These are things that can help with social function and adaptation -- in ways that benefit autistic people themselves, and not just the people they're socializing with.

Trying out Google Glass with Sen-ching Samson Chung
from the University of Kentucky.
[Image: Asian man with short black & silver hair, & glasses
next to Caucasian woman with ear-length red hair,
wearing Google Glass glasses*.]

And I talked with Mr. Cheung about the idea of not forcing eye contact, about learning to look at eyebrows or noses instead — because as you may or may not know, for many autistic people eye contact is painful. It’s an aversive. And they can either give you eye contact, or they can function, but they can’t do both.

Personally, I’d like to see more work on tech for communication, and communication apps. And not just to encourage speaking, but in terms of easier ways to evaluate the communication potential of autistic people. To use my teenage son as an example: He has lots of great scripts,as well as some spontaneous words. So we were told — for years! and by one of the best speech pathologists in our area! — that he didn’t need AAC [augmentative and alternative communication options] because he could speak. And now we know that that’s actually not true, that a lot of autistic people have apraxia, processing issues, and motor issues, which means they can actually communicate better through non-speaking means. But the people who have some words, or can talk, are often overlooked.

I’d like to see more available apps, not just in terms of the kind of learning and adaptive tech some people on this panel and in this room are doing, but in terms of making *screenings* more available. I’d also like to see more recognition that speaking is not the most efficient means of communication for many autistic people.

My final thoughts on forward-thinking goals and dissemination for ASDtech:

Help, don’t try to normalize autistic people. Keep the humanity of autistic people in the front of your mind at all times. They are people, not projects.

Implement good design -- there is so much good tech content stymied by bad design!. This can also ease localization into other languages and cultures.

In many countries and regions (e.g. Accra, Ghana) there is often no or little wifi, or even available devices. Tech has to work under those conditions.

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**Side note: I have asked after useful but assumption-free approaches to describing people of different races and appearances for screen readers. Some people prefer purely objective descriptions, e.g., would describe me as having light beige skin and Mr. Cheung as having dark beige skin -- and leave it at that. Other folks feel it's unhelpful to leave out race. I have not yet come across a fully persuasive argument either way, and am interested in hearing opinions on this matter.

really appreciate the emphasis on helping autistics thrive as autistics instead of making normalization the primary thing. the tech that is most valuable for folks on the spectrum will have that mindset in place from the get go, so again, definitely appreciated those points.

when i think about the times tech has helped me navigate life, it usually gets down to sensory issue management. my eyes are painfully light averse, so i'll give an example...this is really simple, but it just gets to a core point. for most of my life, i would have to read books in very low lighting. a proper amount of reading light is usually too painful, but the light i actually read in is too low most of the time, and my vision has suffered as a result; i can get headaches when i read, my vision has deteriorated a bit, and so on. so, there's an aversion and then the consequences for poor management of the aversion. that's life on the spectrum, trying to find coping strategies, running into unintended results. but one year i received an e-reader as a birthday gift...and the back lighting on it, as well as the fact that you can control the brightness...really changed my life. it seems like such a simple, nothing of a point, but being able to read in a completely dark room...with an illuminated screen...i was emotional for weeks about what a revelation this was. i don't know the specific thing that made this so meaningful to me...but it felt like the tech was creating a new experience, one predicated on my sensory needs, as opposed to the usual experience of having to constantly negotiate, cope, compromise...so that has been something i think about a lot, the ability to live in a personal, tech-enabled reality rather than a reality that is for others, and i just have to make due. i don't know if that makes sense, and i know you are talking about more developed forms of tech...but i appreciated this post, it's difficult to convey how very meaningful tech can be when it comes to life on the spectrum.